Swallowing difficulties 5 months post-op

[ScottishLondoner]

Hi everyone. I’m 46 and had keyhole oesohagectomy surgery 5 months ago for T3N1M0 adenocarcinoma.

I’ve recovered really well in most ways. No reflux and sleeping well. I’ve gained 2 stone (12.7kg) since my post-op weight (having lost 4 stone since my symptoms began) and I feel fit and healthy BUT I’m having increasing problems with eating. I find that any food that I can’t chew down to a soft mush just won’t go down. I can swallow but it feels like it collects at the top of my oesophagus and then I get severe hiccups and pressure and I have to go and regurgitate it manually. I feel that this has actually got worse over the last couple of months.

I’ve been referred for a barium swallow next week and told I may require a dilatation. What I’d like to know is, how painful is the dilatation? Will I feel the benefit immediately? And is it likely that I’ll need to have the procedure regularly in the future? Would love to hear from anyone who’s gone through this.

Thanks so much, Stuart

[petercaron]

I am 6 years post esophagectomy and I have had a dilation about 4 times. Including once when they injected my new esophagus with a little Botox during the endoscopy procedure for the stretch. Here in the US they put you out and it is totally painless. I have heard that in the UK they sometimes do not put you out for an Endoscopy. Is that true? .

They probably will have you eat a semi liquid diet for a day or two after the outpatient procedure.

I haven’t had to redo it for about 1 1/2 years BTW, it works just about immediately

good luck It really helps😄

[purplekey in reply to petercaron]

Yes they will if you let them. Always insist on sedation.

[Misspiggy75 in reply to petercaron]

It's true that in Scotland UK they'll give you an endoscopy and take lots of biopsys while you are wide awake and retching over and over again and I pulled it up three times they were only testing me for celiac and it's been 5 months now and I am still suffering as I have a lump in my throat and chest hurts 24/7 and they said that I have Gerd but I never had any symptoms until they did this to me. Mostly people who have endoscopy done are not to bad but I have breathing problems and I panicked and stressed out pulled it out three times and that's with the double dose of the stuff they inject you with to keep you calm. Somebody died with the general anesthetic years ago and now they are reluctant to put anyone under without a very good reason.

[liz_crisp]

Hi I had quite a few stretches after my op now nearly 14 years ago. I was always sedated and as peter says it worked almost immediately. Good luck

[phil in reply to liz_crisp]

My op was 17 years ago and like you I had swallowing problems. After 3 months I had a stretch and a general anaesthetic and it worked and so far have not needed another onePhil

[ccfc]

I am 11 years on and I had several stretches in the first 18 months. I was sedated so didn’t find it too uncomfortable and the effect was immediate.

[purplekey]

hi sounds like you are doing well you’ve put 2 stone on. Bravo. 5 months is still early days. Yes it sounds like a dilatation is needed. I had one yes it was uncomfortable, won’t lie, but it didn’t last long and I had sedation. I’m 2 years on now only certain breads and mash are slow to go down. I Avoid cheap white bread and lubricate everything with gravy, sauce or butter or all of it! Hiccups probably caused by swallowing wind. Good luck with your procedure and life. It gets better.

[ScottishLondoner]

thanks everyone. I had my barium swallow today and there’s definitely a stricture there. Quite severe by the looks of it. I can hardly manage even soft food now. Panicking that it’s another tumour because this is how it started a year ago, but I had a CT scan recently and it was clear so I’m probably just being paranoid. It is getting me down though.

I feel like I mustered up enough strength to get me through chemo, surgery, and more chemo but I don’t have much left. I just want to be able to eat semi-normally. The thought of another Xmas of liquids only is so upsetting. Will it ever end? 😔

[Popsic]

Hi there, I am so sorry your going through this. I had surgery in 2013, since then I've had 2 tummy stretches, both time I was knocked out so knew nothing of it, but boy isn't it amazing! At the moment I have a feeling that things are slow to go down again, I also panic that it's back again. But it does get better, I thought I would never be the same again, which in one way I'm not, but eating wise, I am ! Smaller amounts, but that's fine and I still over eat at times!. I think that no matter how far down the line you are, every day is a learning day. So take heart my friend, stay strong and positive and the very best of luck to you. X

[Racerrick]

I’ve had several dilation procedures. Never any pain. Have them check for gastroporesis (4 hours) and treat start with medication then Botox then possible operation to open lower sphincter.

[ScottishLondoner]

thanks for the tips. I’ll ask about all of that! Hoping to have the procedure next week, fingers crossed.

[Hidden]

Hi how are?you have got a date for your stretch yet. If not ask for sedative.

[Lab1]

sounds as though you need a dilation. You have sedation like when you have a camera they use a balloon which inflates may have a little sore throat. I had 4 I think in the first year. I am coming up 11 years since I had op. Good luck

[Deeedals]

hi, sounds like you’re doing great. I’m 2 and a half years post oesophagectomy at exactly the same grade as you .

A year ago I had a ruptured hernia and was in hospital for a month as after surgery I couldn’t eat anything. Turned out I had gastroparesis and required a stretch as the surgery had narrowed the opening to my stomach.

Since then I’m relatively well but I avoid bread, rice, meat and meat products (sausages etc) as they seem to ball up and stick, requiring me to vomit for relief.

You’ll find your way through it and learn what suits you. Stay well and good luck

Dee x